This is a blog post I've been wanting to write for a while but haven't because I've feared that it will lead to pity - something I don't want from anyone, especially myself. Pity is demoralizing and tends to dehumanize as well, turning the pitied person into the embodiment of everything bad in life. No one deserves that kind of characterization.
But living with chronic, degenerative illnesses like I do every day is something a lot of people don't hear about and therefore don't understand. We become invisible to society because we would rather disappear under the bedsheets than be a burden to anyone. And that is a great disservice to society and humanity in general. We are all formed by our experiences - good and bad - and so ignoring the bad makes us less human. Americans tend to want to look strong and independent in order to be accepted and admired by others. It's a toxic societal trait that I want to change. And therefore the reason for this post.
I became chronically ill 18+ years ago in my mid-forties when my life was seemingly at its best. My career was taking off, I was in good shape physically, I was passionate about the non-profits I was leading as a board member, I was traveling the world, and I was constantly out with friends having fun.
Doctors couldn't figure out why I became so exhausted all the time because every test they did was perfect. I was given the diagnosis of Chronic Fatigue Syndrome (CFS) and sent on my way.
Skip to today.
My life now is very different. I'm only able to work half-time at a job that is laughable compared to where I was in my career. The only travelling my husband and I do is by car. I rarely go out at night and when I do, I pay dearly for it. My volunteer work is very limited. I cannot even go for short walks never mind regain my gym routine.
I started seeing specialists in Boston who have developed tests to prove that those with CFS have diagnosable diseases. So I now have Dysautonomia and Small Fiber Polyneuropathy (SFPN) added to my medical chart. Both of these are mostly untreatable though I am on some off-label use meds that have helped in some areas.
My five-hour work days (Mon-Thu) start with my being awakened out of a dead sleep by my alarm at 8:15 am. It takes a while for me to get up and start the day because I get lightheaded and dizzy when I stand up. I drag myself through showering, dressing, and eating a small breakfast. The IBS kicks in as soon as I eat and I spend the rest of the day alternating between popping Tums and running to the bathroom.
During the day, I break into massive sweating episodes, drag my legs around the office, struggle to write because my hands don't work correctly any more, and pop Aleve for the excrutiating, non-stop "coat hanger pain" that affects my neck, shoulders and upper back.
When I get home from work, I try to do little things like water my flowers in the summer, pay some bills, do laundry. Then I put on my pajamas and fall onto the couch in so much pain and so completely exhausted that I can't even think straight. If I've done my weekly grocery shopping that day, I have to lay down on the couch before I'm able to be upright again. And when I'm in a bad flare from overdoing things, I have stroke-like symptoms: I can't form words, my vision gets very blurry, and I am unable to process any information coming at me.
Dinner is usually something easy like a sandwich or a bowl of soup. After dinner, I'm back on the couch vaping medical marijuana which is the only thing I've found that helps the pain and the nausea, and also helps me sleep at night. I watch the news and surf social media to connect with what I feel is an ever-shrinking world for me.
The full-body pain at night is a level that defies description. But I'll try. My legs are the worst. They feel like tree trunks that are on fire while a logger is hacking away at the wood. Deep deep pain, muscle spasms, and stinging/burning nerve pain. It does improve quite a bit once the cannibas finally kicks in but not always. Until that time I have moments that the pain is so intense that I can't breathe.
I go to bed and sleep anywhere from 10-13 hours. Then my day starts again. I used to do more on my three days off but even meeting friends for lunch has become difficult now. I feel like I need to sleep/rest for three days in order to get through four days of part-time work.
No one sees just how bad I am except for my husband, my medical team when performing grueling tests, and my sister and her family who I sometimes spend weekends with.
When I'm with other people including at work, you would likely never know just how bad I am. I smile, I laugh, I tell jokes, I hustle around getting things done. Because like most people with illnesses like mine, I don't want my life defined by my disease. I love being with people. It makes me happy to feel like I've still got quality of life. So I pretend. And stuff it all down until I get home.
Saying "no" to things I always enjoyed doing is heartbreaking for me. Every year I say no to more and more things. Some are simple things like food I enjoyed that now makes me violently ill. I've already had to say no to the bigger things like my career that I miss more than anything else. So the simple things were all I had left. And even those are disappearing now.
My future is not bright. I expect to get worse and I anticipate a shorter life which makes me sad. I want to see my nieces and nephews grow up and get settled. I have young people in my life who I've mentored and have become family to me. I want to see what they do with their lives too and be a part of them somehow.
I feel constant guilt about not being the partner I always expected to be for my husband. He has had to work longer than he wants so I can have the good health insurance I need. And he does so much for me that I am no longer able to do for myself.
This is all I wanted to say, I guess, so that others will understand that not all of us are living the life you think we are based on how we interact in public. We don't want your sympathy or pity just your understanding and respect for the boundaries we need to put in place in order to get through the day.
If you can remember my story when you encounter someone who might need to keep conversations short, or cancel plans last minute, or is struggling to process something you've said, then this post is worth all the energy it took to write.
